An Active Day With a Few Surprises

Kate continues to bounce from “knowing” me to “not knowing” me. Saturday she got up late. She didn’t know me and was suspicious of me. Sunday she recognized me immediately as her husband. Yesterday she was awake early (about 7:00) and didn’t recognize me. This time, however, she seemed perfectly comfortable with me as though we were very well-acquainted.

She asked my name several times including once at breakfast. Then she asked if I were married. Before answering, I asked if she were married. She said she wasn’t. I said, “I’m not either.” I asked if she wanted to be married. She shrugged and said, “Maybe sometime.”

After breakfast, we went to the family room where I planned for us to look at one of her family photo books, but she was tired and rested for close to an hour. Then she asked what she could do. I suggested that we look at one of her photo books. She responded very differently. She seemed a little uncertain about me and expressed hardly any interest in the photo book. We completed it, but she was never engaged. It seemed like she was irritated with me, but I couldn’t think of anything I might have done to cause it. I suspect her brain had made some critical changes while she rested. She didn’t want to look at anything else and wanted to rest again. I took her to her recliner where she rested again.

I’ve served on only one church committee during the past 3-4 years. It’s the one that calls members on their birthdays. While she rested, I made my birthday calls.  When I finished, she gave me a big smile and said, “You did that well.” She was in a completely different mood.

The sitter came at noon. She and Kate were just about to eat lunch when I left for Rotary. Kate was happy and didn’t show the slightest concern about my leaving.

When I returned about 3:45, I saw the two of them standing in the family room near the door to the kitchen where Kate appeared to be looking at her ceramic cat. I quickly discovered she was rather hyper though not agitated. The sitter said she had been walking all around the house and had been doing so for quite a while before I arrived.

This has happened a couple of times before when I have been with her. She walks around looking at everything with great interest. I continued to walk with her after the sitter left. I gave her my typical commentary. We spent at least another forty-five minutes looking around the entire house before taking a seat in the family room. She wasn’t tired, and we looked at her “Big Sister” album. Nothing seemed to ring a bell with her, but she was quite interested. We spent another thirty minutes with it before going to dinner.

We went to a nearby Mexican restaurant. On the way and during the meal, she spent a lot of time thanking me for taking care of her. She was sincere, but the way she expressed her appreciation was consistent with the hyper behavior that began while the sitter was with her.

She did something else that she has done a couple of other times at restaurants including this one. She wanted me to take pictures. First, she wanted our server to take our picture. Later in the meal, she asked me to take a picture of her. She asked me to wait while she got ready and began to create a little “food art” with her meal. This was very much like something she had done at home recently.

She began by taking some of the food off her plate and carefully placing it on the table. She also moved her sunglasses, napkin, and drink to places she thought were aesthetically pleasing. When I thought she was through, she took almost all of the food and placed it back on her plate. As we left, she wanted one more picture of herself.

When we got home, I played the other half of Sound of Music that we had started a couple of nights ago. Although she was in bed, she was more engaged than I have seen her in a long time.

She was still awake when I got in bed. I moved close to her as I always do. I quickly found that she didn’t recognize me. She told me her husband would be home soon and asked me to move away from her. Despite that, she seemed rather comfortable with my being there, just not that close. Not a typical way to end our day.

“Knowing” and “Not Knowing” Me Experiences

I’ve found caregivers as well as friends attribute a special significance to those moments when our loved ones fail to remember us. The first time it occurs is especially noteworthy. I remember the first time my mom told me she didn’t have any family. I said, “What about your sons?” She said, “I don’t have any sons.” Looking back it may have been my first wake-up call as to how far along her dementia had progressed.

Surprisingly, I don’t recall exactly when I experienced that same moment with Kate. I know it was two or three years ago. I do recall that it was also a moment that signaled a new stage in the progression of her Alzheimer’s. There was certainly a touch of sadness, but not as much as one might guess. It was something I knew to expect. I just didn’t know exactly when it would happen. I also knew that because she didn’t know me at that time didn’t mean she wouldn’t know me at other times.

Since that moment, there has been a lot of variability in her knowing my name and our relationship. Sometimes she does; sometimes she doesn’t. I don’t test her, but I can often tell when she doesn’t. During the past year or so, she hasn’t known me by name or relationship most of the time. That is different now. It is not unusual for her to call me by name, but it usually occurs spontaneously, especially when she needs something. When she is talking to one of our sitters or the woman who cuts her hair, she often refers to me as “My Boy” or “My Guy” as well as “My Husband.” Sometimes she doesn’t recognize me, and asks me where I am using those same expressions.

As I have noted many times before, she almost always recognizes me as someone who is familiar to her and whom she trusts. That has been changing during the past few weeks or months. Yesterday was one of those days. Between 11:00 and 2:30 when I was finally able to get her out of bed, she didn’t know me at all. I believe that is why it took me so long to get her up. She didn’t recognize my face or my name. She didn’t look frightened, but she was suspicious of me. I should add that she didn’t know her own name. That, too, is very common. There is no way to be sure, but I think that most of the times when she doesn’t know my name she doesn’t know her own as well. It’s as though a switch has turned off in her brain and blocked all the signals for the people she has known best. That includes all of her family members including her parents.

After getting her up, she was perfectly comfortable letting me help her with toileting, showering, and getting dressed. Once out of the shower, she seemed to be less confused although tired. I got her dressed. Then she wanted to lie down on the bed. She rested about ten minutes. The rest of the day went well. I don’t know if she knew her name, or mine, or our relationship, but she responded to me as though she did.

When I got in bed last night, she said, “Who are you?” I gave her my name. She didn’t recognize it. Then she said, “Who am I?” I told her and said that we had met in college and been together since then. She didn’t challenge me. I said, “I’ve always liked you. In fact, I love you.” She held my hand and said, “Me, too.” I doubt that she knew my name or our relationship, but it was a nice way to end the day.

Addendum at 2:00 p.m.

Follow up to my earlier post

I heard Kate say, “Hey” just before 11:00 this morning. When I got to her bedside, she was about to sit up. I said, “I’m glad to see you, and I love that smile. You are very special to me.” She said, “I guess that’s how we’ve stayed married so long.”

I was surprised as this is a time when she is most likely to be confused and not remember me. Even on mornings when she responds to me as though she knows me, I don’t recall her ever saying something that so clearly indicates she knows our relationship. It was a very pleasant surprise. It was also a good indication of how she would feel getting ready for as well as going to and from lunch. She closed her eyes on the way home and is now resting on the sofa.

An Update on “Knowing” Me

Tuesday got off to a better start than Monday, but there was a blip that afternoon. Kate had been resting on the sofa, but I could see that she was awake. An old Ronnie Milsap album was playing, and he was singing “What a Difference You Made in My Life.” I walked over to Kate and said, “That’s what I could be saying to you.” She said, “What?” I explained and she gave me a dirty look. I realized that she hadn’t recognized me, but I was startled and said, “Help me understand. Why you did that?” She said, “I don’t know,” a stock answer for almost everything. Then I said, “I think I understand. You don’t know who I am.” She said she did, and I said, “Who?” She said, “The girl across the street.”

I didn’t tell her otherwise and took my seat again. In less than three or four minutes, she made an abrupt change in mood. She looked at me cheerfully and sat up. She started to stand but then picked up two of her photo books and wanted to take them home. She asked me to put them somewhere. I took them. She found several other books she wanted to take with her.

Then she wanted to go to the bathroom. She gave me a smile and cheerfully spoke to me as though the previous incident had never happened. I am sure she had no recollection. I showed her to the bathroom. When she was finished, I thought we would get ready for dinner. Instead, she got in bed and pulled the sheet over her. I was concerned that she might not get up, but she surprised me. Only a few minutes passed before she got up on her own, and we had dinner. She seemed just fine. That didn’t mean that she recognized me as her husband, but she was as friendly with me as she normally is. The following day we had a similar experience that was just as short-lived.

At least twice yesterday, she spoke harshly to me and then apologized. One of those times we were in the car, and she said she didn’t know why she had responded that way. I don’t recall her exact words, but she had a concerned look on her face and said what I interpreted as a recognition that something is the matter with her that causes her to behave this way. That fits with so many other signs of her self-awareness.

I’m not quite sure what to make of this. It could be like other things that occur once or twice and not again, or it could be the beginning of a progression of her Alzheimer’s that only gets worse. My guess would be it’s something that will get worse though I think her dependence on me and the positive feelings derive from that relationship will last a long time. At least that’s what I’d like to believe.

What Comes and Goes But Never Disappears?

The other day, I received the following reply to one of my tweets. “It is interesting how some with Alzheimer’s do not know your name or relationship but know who you are and that you are their special person. I have no doubt that Kate knows you are her special person.”

I, too, have no doubt that I am Kate’s “special person.” That is one of many things that I didn’t anticipate nor understand when we started this journey together. I won’t say that I fully understand now, but I do recognize that “knowing” someone is much more complex than I originally thought.

From the beginning, I knew that Kate would forget me, but I didn’t think about it in any detail. It was just something I envisioned as one of the saddest moments I might encounter.

I remember the day I discovered that my mother didn’t “know” me. She and I were talking while my dad was in another room. She had mentioned not having any family. I said, “What about your husband?” and she said, “I don’t have a husband.” I was stunned. I hadn’t noticed anything in her behavior that would suggest she didn’t know him. I asked about her sons. She said, “I don’t have any sons.” That blow was softened by her answer to my previous question, but it still caught me off guard.

More specifically, I was surprised because she almost always related to me so warmly and repeated something of a mantra. “You’re such a nice boy. You always were.” I didn’t understand how this could be. It made me wonder how long she had not known me as her son. How had I missed that?

I understand a little better now. At least, my experience with Kate has made this seem perfectly normal (that is, for someone with dementia). In addition, my learning about the difference between rational and intuitive thought or abilities has been powerful in facilitating my understanding. Knowing my name and relationship requires rational abilities, and she has lost those. Developing a comfort level and feeling heavily dependent on me requires something different, her intuitive abilities. Those abilities allow her to sense whether she likes me, trusts me, and depends on me. It is those abilities that will last a long time. For some PWD, they last forever.

Like many people, I thought forgetting me would just occur one day and that she would never remember me again. I quickly discovered memory for names, places, etc. comes and goes. At first, the loss of rational memory occurs infrequently but gradually increases. During the past few weeks, Kate has had greater difficulty with her memory of many everyday things like fork, napkin, and Dr. Pepper. In the past few days, she has had times when she couldn’t remember anything about her parents. In addition, her memory of my name and relationship has been even harder for her to recall than in the past; however, she is still comfortable with me though curious about who I am.

Something new has occurred in the past few months. It reminds me of something similar to an alter ego. We had a good example yesterday morning. I noticed on the video cam that Kate was about to get up. When I reached her, she seemed wide awake, quite unlike most mornings. She greeted me enthusiastically and was very talkative. I decided to take advantage of that. Instead of proceeding to get her up, I sat down on the bed beside her and talked with her. We had a beautiful 15-20-minute conversation. I was taken aback, however, when twice she mentioned her husband. Both of them were positive references. Until hearing this, I would have sworn she remembered both my name and our relationship.

As I suggested earlier, this is not the first conversation in which this has happened. I expect it will happen again. Perhaps I will be less surprised next time; however, the point I want to make is that she had two separate memories of me. One was the person with whom she was conversing, someone she recognized and with whom she was very comfortable and liked. The other was her husband who was not present but was also someone with whom she had a similar comfort level. The difference was only the distinction in our “official” relationship. He was her husband, and I was her “friend” (?).

I should add that she has often thinks of me as her father. That first happened a couple of years ago. It almost always begins with her asking, “Are you my daddy?” I usually answer with something like, “Would you like that?” or “I’m happy to be your daddy.” Then she smiles and calls me “Daddy.” After that it seems totally forgotten until the next time.

Until I was part of this conversation and several others like it, I never imagined this happening. It is one of many things that can seem strange or impossible, but with dementia almost anything is possible. It certainly adds another layer of complexity to the concept of “knowing” someone. Knowing me comes and goes: nevertheless, in some ways, it never disappears.

A Sad Moment to End our Day

The past few days have made me more aware of something many other caregivers  talk about. People with dementia can change quickly from one moment to the next. I frequently find myself caught off guard by Kate’s behavior. Take last night for example.

After spending most of the time sleeping or resting from Thursday night until getting up for dinner yesterday, she was in bed about 7:15 and asleep shortly after that. I was surprised when two hours later I heard her say, “Help me. Help me, please.” I told her I would. She repeated her pleas for help several times before I could get in bed.

After joining her in bed, I asked how I could help her. Her most common response is to say, “I don’t know.” Instead, she said, “I don’t know anything. Help me.” I told her I could help her and said, “First, do you know who I am?” She said, “What’s your name?” I told her and she repeated it but mispronounced it a couple of times. I coached her, and she got it right. Then I asked if she knew her own name. She didn’t. I said, “Your name is Kate.” She said, “Now let me say it.” She couldn’t remember it. I repeated her name twice. She repeated it successfully. For the next 15-20 minutes we repeatedly went over her name and mine. As soon as we finished one repetition, she wanted to go through it again. I wish I could capture the tone of her voice and how intent she was about trying to remember her name and mine. That is what made it so sad. She wanted to do something she simply could not do. The extent to which she was bothered is another example of her awareness that something is wrong with her. She was only successful a couple of times, and then it immediately followed my repeating the name. It was a powerful example of just how poor her short-term memory is, that is, virtually non-existent.

The only good news coming out of the experience is that she began to tire and wanted to go to sleep, and she as been all right today.

Awareness of Vocabulary Loss

On many occasions I have mentioned Kate’s awareness that something is wrong with her. That is most evident when she is disturbed over not being able to recognize her surroundings or know who she is. I have also mentioned that her vocabulary is shrinking. Many everyday words are rapidly disappearing.

Until this past Monday, I hadn’t noticed any sign that she recognizes the latter change. We were in the bathroom brushing her teeth when I used a word that she didn’t understand. I don’t recall what it was, but it was something ordinary. I didn’t think much about until she said, “I like the way you talk.” I told her I thought I talked the way she does. She told me that I know more words than she does. She said it matter of factly without any sadness or great concern. I feel good about that, but it was a reminder of how much self-awareness she retains. She has far more insight about herself and others than I give her credit for. That awareness may well account for those moments when she seems depressed but can’t explain what’s wrong.

Kate is Like a Child.

I suppose everyone has experienced and been delighted by the innocence of children. As a youth and during most of my adult life, I didn’t give much attention to children except for our own and those of family and friends. As I aged, I developed a greater appreciation of the gifts they bring us. They haven’t developed the sensitivity adults have about “proper” behavior. They behave and speak as if it only matters to them and no one else. They express what they feel so naturally.

Kate has always been interested in children. The nineteen years she served as our church’s volunteer librarian were especially fulfilling for her. Much of her work involved children either directly or indirectly. She would have kept her responsibilities as librarian had it not been for her Alzheimer’s. She realized before her diagnosis that she was no longer able to fulfill her position the way she thought she should and resigned.

During the past nine years, her interest in children has become a fascination for her. She enjoys watching them wherever we go and often speaks to them and compliments the parents for having such beautiful children. That has further increased my own appreciation of them.

That leads me to think about Kate. For the past three or four years, she has been somewhat more childlike herself. Increasingly, she behaves with me much like a child with her parent. That is expressed in several different ways.

The most typical example is her wanting to show me little things she has done. She seems proud of herself for what she is doing and wants my recognition. She likes me to watch as she pulls strands of her hair and runs her fingers between each of her toes to get “them” out. She asks me to look at her as she picks her teeth with her fingernails thinking there is something is stuck between them. She is sensitive about her skin and daily runs her fingers across the skin of her arms and legs and shows me her hand and says, “See them.” I try to pay attention and reinforce her belief that she is doing something good.

Above all, her most childlike qualities involve her expressions of enthusiasm for things she enjoys. Her pleasure over the beauty of flowers, trees, shrubs and house plants is the best example. The arrival of spring has brought daily moments of pleasure. She loves to share her enthusiasm with me and sometimes says, “Look at the pink (green, yellow.) “Do you see it?” I translate her question as “Won’t you share this beautifuI moment with me.” I never tire of seeing how excited she is almost every time she walks in our family room. That is particularly true when she sees the two small pots of African Violets. She also takes time to admire the four Poinsettias that have survived the winter. Occasionally, she sees the hydrangeas at the far end of the room and walks over to get a closer look. If she turns around after admiring them, she sometimes is surprised to see the Poinsettias again. I don’t ever recall seeing any sign that she is aware of having previously seen them or any of the other plants prior to that moment.

The newest source of pleasure involves her food. This has only occurred since being homebound. It seems surprising because the meals I prepare are very simple and most of our takeout meals aren’t the same caliber of those we have eaten at the restaurants. She rarely leaves anything on her plate. The exception would be the skin of apples and tomatoes as well as the crust of her bread.

She always wants to share her pleasure with me. It never dawns on her that her entrée and mine are almost always the same. Even when I tell her, she often says, “Try it. You’ll like it.” and passes her fork with a sample for me to taste.

It’s not just that she likes the food. She is animated and talks about it during a large portion of our meal. She liked her meals when we were eating out, but it was usually a special dessert that she talked about most. I never thought she was at all inhibited in a restaurant, but, perhaps, she feels even freer to talk when it is just the two of us at home.

Another possibility is that it is simply a side effect of her Alzheimer’s. She has forgotten most of the foods we eat. For a while, that was limited to a few things like pizza and pepperoni. Dr. Pepper has always been her favorite drink, and she wouldn’t drink the diet version. Now I only buy diet. It doesn’t make any difference even when she is looking at the bottle from which it was poured. She has also almost forgotten the name Dr. Pepper except to recognize it when I offer it to her. She raves about how good it is with almost every sip and then asks, “What is this?” We go through this multiple times during a meal. I suspect that is happening with all the other items on the table. As far as she knows, what she eats and drinks is always new and always good.

Some of you may be thinking, “How sad that she no longer recognizes the names of her favorite things.” You would be right. It is sad. It can be especially painful for me as her husband. How I wish I could spare her from these things as well as those that are to follow. My only way of adapting is to recognize that it is totally out of my control. All I can do is try to keep her safe and happy. I pour all of my energy into that. I’ve learned to live in her world and to be joyful that she can still enjoy life. I am also aided by the fact that she is so dependent on me. She is like a young child, she can do very little on her own. She needs help with everything, and I am willing and able to give it.

Does Kate Still “Know” Me?

It’s been almost two years since Kate first asked my name. I mentioned it to a friend in Rotary who has been very active in our club’s support of a project to raise funds for Alzheimer’s research (CART, Coins for Alzheimer’s Research and Treatment). A week later he made an announcement encouraging club members to contribute and mentioned what I had said. He conveyed how devastating that must have been for me.

While I would not have used that word, it was a moment that took me aback even though I knew that it would come eventually. I also knew that this was just forgetting my name in one moment and that at other times she would recall. I took it as a sign that the day might be coming when she would completely forget who I am and wondered how long that would be. At this point, I still don’t know. That’s good news because it means she continues to remember off and on both my name and that I am her husband. In fact, in the past few months, she has called me by name more than she did a year ago.

There is even more good news. Although it is common for her not to remember my name and relationship, she almost always recognizes me as someone who is familiar and with whom she feels comfortable. She trusts me. Two incidents occurred yesterday that are good illustrations.

At 8:30 yesterday morning, twelve minutes into my walk, Kate sat up in bed. I went to her. She was ready to get up. Although she expressed her general unfamiliarity with the location of the bathroom and what to do when there, she did not appear to be disturbed at all. I took her hand and walked her to the bathroom.

For months, she has asked what to do when I show her the toilet. Recently, I started telling her to pull her underwear down and sit on the toilet, and everything would come naturally. Once seated she understands I was right and sometimes, as she did yesterday, seems amazed that “the water just comes out.”

After using the toilet, she asked, “What next?” I told her it would be a good time for a shower. She didn’t hesitate and just asked where and what to do. I turned on the shower and led her inside. She was very comfortable with me and preferred that I take the lead in bathing. The was the first time she just stood there and turned around when I asked so that I could reach all around her.

As we walked out of the shower, I said something I don’t often say, “Do you know who I am?” She said, “No, who are you?” I gave her my name, and we continued to the bedroom where I helped her dress. Then she lay down to rest. I believe that during the time from getting up until that moment she didn’t know my name or our relationship, but she obviously trusted me. Of course, that could have been because I was the only one available. I believe, however, that her comfort level expressed the nature of our relationship and that she would not have responded the same way with a stranger.

The second illustration occurred late yesterday afternoon and early evening. Following her afternoon rest, she sat up and said she was ready to eat. I told her it was a little early for dinner and suggested she have a snack to tide her over until then. We went into the kitchen where I gave her a banana. She didn’t remember what a banana is but was delighted when she took the first bite.

It was clear that she also didn’t remember we were in our house, so I decided to give her a tour of the dining and living rooms. We must have spent ten minutes in the dining room. I am embellishing my commentary even more now. I pointed to the chandelier (never remembers what a chandelier is) and explained that was from her parents’ home. I said, “Can you picture your mother and daddy looking at different fixtures and finally deciding this was the one they believed was best for their new home then under construction. Her mother was quite a cook and loved to entertain. I reminded Kate of all the celebratory occasions and specific family members that would have eaten under the light of that chandelier. She loved the tour, but all the family items I showed her never made her recognize she was in her own home.

When we entered the living room, she was tired of standing and asked if she could sit down. We sat on the sofa that had been in her parents’ living room. I reminded her of the times we had sat on that sofa and sneaked a kiss or two after her mother and daddy had gone to bed. I didn’t yesterday but sometimes I also remind her of the doorbell that her parents had installed for her grandmother who stayed with them in the winter. Her mother rang the doorbell as a signal when it was time for me to leave.

Kate was tired and asked if she could rest on the sofa. I told her that would be fine and that I would get my laptop and sit with her. She rested about forty-five minutes before asking when we were going to eat. I told her we could order takeout from Chalupas right then.

As she got up, she asked me where I live. I said, “Right here with you. This is our house.” She looked at me skeptically. I didn’t say anything more. Her conversation in the car going to and returning from the restaurant made it very clear that she didn’t know my name or our relationship. I responded to one of her comments by saying, “I hope you feel you can trust me.” She said, “I do. You’re a nice guy.” I said, “I’m glad to hear that because I like being with you.” She said, “I like being with you.”

We ate our meal and then went to the bedroom where she started to work on puzzles but became frustrated with the first one. I gave her a couple of photo books to look at while I watched some of the evening news. She wasn’t interested. I asked if she would like to get ready for bed. She was. She was very cooperative in taking her medicine and putting on her night clothes. She went to sleep but woke at least for a minute or two when I got in bed an hour and a half later. She responded to me warmly just as though she knew I was her husband. Did she? I don’t know. I do know that she tapped me on the arm early this morning. I looked at my watch. It was 4:44. She said, “I love you.” I said, “I love you too.”

Does it really matter whether she knows my name or that I am her husband? She knows “me.”

Continued Mixture of Confusion and Happiness

Yesterday morning as I was taking my walk around 7:20, I heard Kate scream. I went to the room. She was upset but not as much as I would have expected from her scream. I am guessing she must have had a bad dream because she acted like she wanted to go back to sleep. I asked if he would like me to stay with her. She did, and I remained in the bedroom for about thirty minutes. Then I continued my walk.

She quickly went back to sleep and didn’t wake up until 10:20. At that time I heard her say, “Hey.” Her voice was soft, and I wasn’t sure that I had heard her. When I reached her, she confirmed that she had called. We talked a few minutes, and she seemed all right. Like the day before, I soon learned that she was confused. Before getting out of bed, she said, “Who are you?” I gave her my name told her that I was her husband. She reacted strongly to that, and I said, “I am a good friend, and I can help you with anything you need.”

We walked to the bathroom, but she was a little uneasy with me when she used the toilet and when she showered. She was resistant to my helping with her shower. She said, “Don’t ever tell anyone about this?”

The shower turned out to be good therapy. She enjoyed it and said she felt better when she got out. She was still guarded. She was comfortable enough to let me help, but she was also trying to keep her distance from me. A funny thing happened as I helped her dry off and get dressed. As she often does after a shower, she wanted to lie down on the bed. Then she surprised me by saying, “Don’t forget my (unclear, couldn’t think of the right word).” She pointed to her toes. She had already run her fingers in between each toe. Now she wanted me to do it.

When we left for lunch, she seemed quite comfortable with me, but I don’t think she recognized me as her husband. During lunch, I eased into some comments that would suggest we had known each other a long time. Our server told us she would be leaving to spend a semester in Berlin. I mentioned that we had visited there and that she would like it.

When she stepped away, I talked to Kate about some of the places we had traveled. I deliberately failed to mention our marriage. She seemed to accept what I said without any concern or confusion or fear that she didn’t remember these experiences. At little later, I mentioned that our son was planning a trip to see us. She seemed fine. I never asked if she knew I was her husband.

We had a very brief sad moment in the car on the way home. We had stopped at the pharmacy to pick up a prescription. As I came to the exit from the parking lot, she saw a stop sign. She tried to read it but couldn’t. I told her it said, “Stop.” She said, “What’s that?” I explained. She looked sad and said, “I don’t like to be a ‘duppy.’” She meant “dummy,” of course. I said, “You’re not a dummy.” You’re a smart gal.” She got excited and said, “Hey, and I didn’t even pay you to say that.” It’s been almost nine years since her diagnosis. She forgot a long time ago that she has Alzheimer’s, but she still knows at this late stage that she’s “not right.” She wants to be but can’t. That’s sad.

That moment really was brief. It lasted only minute. When we got home, she rested for a couple of hours in her recliner. As usual, her eyes were open off and on. I’m not sure how much she actually slept. I do know that she was quite calm and seemed happy. Halfway through her rest, I asked her if she was relaxed. She was. I told her I was as well.

A short time later, she accepted my offer to read something to her. This time I chose something different. I picked up the photo book that she and her brother had made in the early days after diagnosis. It focuses on her mother’s family who lived in Battle Creek. At the end of the book there is a section that focuses on the Kellogg brothers, Battle Creek as “Cereal City,” and the Battle Creek Sanitarium where Kate’s grandfather was a doctor. I read for about forty-five minutes. She was interested and asked me to re-read much of it as she tried to take in all the information. It had been a long time since I had read it, but I will put this on my list of things to read more frequently.

Our dinner and time at home afterwards were good as usual. With all the changes that are going on, I still find that afternoons and evenings are the most predictably good times for us. That’s a nice way to finish the day.

Morning Confusion and Fright, But a Pleasant End of the Day

Kate was sleeping soundly when I woke her about 10:45 yesterday. She got up without a problem. I thought everything was fine. It wasn’t until I helped her out of bed that she showed any signs of fright and confusion. It was a time when she didn’t have any idea of who I was but gladly responded to my assistance in every way. I told her I was her husband, and she said, “No.” I said, “How about good friends?” She said, “That’s better. She depended on me to tell her what to do and how to do it. For example, washing hands and brushing teeth were like she had never done either before. I was very careful not to rush her. I knew she had plenty of time to be ready for the sitter. That may have helped. I know she didn’t get irritated with me at all.

After she was dressed, she was disoriented. I took her through the hallway outside the bedroom to see photos of her mother and grandmother. She often guesses the photo of her mother is of her. This time she had no idea. She also expressed less interest in the photos than the past. Then we went directly to the kitchen for her morning meds. That went smoothly. When she had taken the last one, we had a few minutes before the sitter was to arrive. I told her she would be going to lunch with Cindy, and I was going to Rotary. I don’t remember her exact words, but she sternly said something like, “You are not.” I asked her to come with me and took her to the family room. I showed her The “Big Sister” album. She didn’t recognize herself or her brother in the cover photo.

We sat down on the sofa, and I opened the album and showed her the pictures on the first few pages while giving her a commentary on them. Her interest grew. A few minutes later when Cindy arrived, she was happy. Cindy sat on the other side of Kate, and I went to the kitchen to get my things. I walked back to the room to say goodbye and noticed that they were looking at a picture of Kate’s parents. I made a comment about them, and Kate said, “How did you know?” I told her that I knew her parents. She turned to Cindy and said, “I don’t even know who he is.” I said goodbye while the two of them continued looking at the photos. She didn’t show any concern that I was leaving. I felt good that she was comfortable with Cindy.

When I returned home, Kate was, as usual, lying down on the sofa but not asleep. She didn’t express any enthusiasm about my being home, but she wanted me to help her up. I discovered a few minutes later than she was ready to leave. She wanted to go home. I took her to Panera and got her something to drink. She worked on her iPad, and I did the same on mine. She got along pretty well on her puzzles without much help from me. An hour later, I suggested that we eat dinner there instead of going for our usual Mexican meal. When we finished, I took her back home. She didn’t say anything more about going home. This routine of leaving the house for “home” has worked each time I have tried it. That makes it an easy to address this problem. It is certainly better than telling her she is already at home.

Kate worked on her iPad for almost an hour after our return, but she had great difficulty with her puzzles. I was seated in a chair across the room from her watching the evening news. Every few minutes I had to get up to help her. She tired of this before I did and asked if she could get ready for bed. I turned on YouTube with a series of Andre Rieu videos that she enjoyed for an hour and a half. Then I put on some especially relaxing music on our audio system. When I got in bed, she was still awake but very relaxed and happy. That was two hours after she had gotten to bed. That is rather commonplace now. It may be that she isn’t really that sleepy. She just needs to rest her brain for a while. The music relaxes her. She doesn’t have to hurry to get somewhere. And she doesn’t have to experience any of the normal frustrating or intimidating situations she does at other times of the day. Living with Alzheimer’s is an emotional ride.